Siebe was borne after a normal pregnancy, 40 weeks. His start wasn’t so good. At just one day old, he began having convulsions, during the first 3 weeks. It was terrible. Of course the doctors were concerned. They would tell us, “there has to be more… genetic, but we don’t know what it is”.
It went from bad to worse with Siebe.
At the age of 4 weeks old Siebe became very ill. They brought Siebe to the operation room where they found that his intestines were twisted and died off. Today he’s missing half of his small intestine and has been diagnosed with Short Bowel Syndrome.
Feeding was a big problem the first 4 years. He was getting Nutritionals through the bloodstream. This posed many medical risks where he suffered blood poisoning numerous times.
These were difficult years with many concerns.
Siebe came home for the first time when he was 8 month old. We were overjoyed. Even though the next 4 years we would have to bring him 30 times to the operation room….. Mostly we spend our time in the hospital. At 4 years old, Siebe would get a feeding tube. He now still overnight tube feeding and he eats a little bit. But this is pureed food. So his intestine problem one of his biggest challenges.
His mental development is impaired. Developmentally he is roughly between 3-6 years old. He was late going to talk and walk. He talks at the age of an 8 year old. But he is an avid reader.
We are very proud of our son and the gains he continues to make. Who would have thought all those years ago that he would now ride a bike?
I want to describe some characteristics of Siebe: Siebe loves jokes. He scares very quickly and is quickly frustrated and impatient. His photographic memory is very high. He likes to cuddle and loves his friends/family. Siebe goes to special education which has helped him make a lot of advances.
About three years ago, when Siebe was 9 1/2 years old, they found a Belgian boy with the diagnosis PACS1. Our doctor realized this is what Siebe has as well. It was a relief to finally know.
We were relieved to know we are not alone. I began a Facebook page for other parents whose children have PACS1 to begin a community of sharing. It has been wonderful.